IMPACT is The National Institute on Aging IMbedded Pragmatic Alzheimer’s disease (AD) and AD Related Dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory. The IMPACT Collaboratory conducts research on Alzheimer’s disease and related dementias, specifically, embedded pragmatic clinical trials (ePCTs).

An embedded pragmatic clinical trial (ePCT) is a trial based on implementing an intervention that can be “embedded” within routine care provided within a healthcare system, agency or organization, or other non-healthcare based organizations. The intervention is implemented in a “real-world” environment by practicing clinicians or non-clinical staff, not interventionists. A core component is that the intervention can be maintained for real-world use and sustained beyond the scope of a trial. Most ePCTs utilize data available from electronic health records, administrative data, or claims data to assess effectiveness outcomes.
The NIH Health Care Systems Research Collaboratory Living Textbook of Pragmatic Trials is a helpful resource to learn more about ePCTs.

The role of the Lived Experience Panel is to provide ongoing feedback including:

• What are important topics for research?
• How can studies be designed so that participation is easier for people living with dementia and their family members and care partners?
• How can people with lived experience of dementia be involved in design of research and implementation of research studies?

Panel member’s feedback will inform the activities of the IMPACT Collaboratory.

It is critical to include the perspective of people living with dementia as well as care partners in the discussion of necessary care, services, and supports for those affected by dementia. Including the personal experiences of those living with dementia and care partners can provide vivid examples that help researchers, professionals, and other stakeholders better understand and prioritize the most urgent needs.

Nominees for the Lived Experience Panel should fit one of the following categories:

• Individuals with a documented diagnosis of early stage Alzheimer’s, Mild Cognitive Impairment (MCI) or other early stage dementia.
• Care partners/caregivers representing his or her own experience caring for an individual living with dementia.
• Care partners/caregivers who can represent the perspective of one or more individuals living in the middle or late stage.

Additionally, nominees should have the ability to participate independently in conference/video calls and use email. Some guidance will be provided during the orientation.

The meetings will occur for 90 minutes every 3 months over video and/or conference calls. The term on the panel will be a minimum of (1) year, with potential for some members to serve longer terms.

The Panel will be composed of 12 individuals.

New members will be selected annually. Individuals interested in participating in the 2021 Panel should complete the Lived Experience Panel Nomination Form by March 12, 2021. The next deadline will be for the 2022 Panel term on October 1, 2021.  Project leaders will schedule telephone interviews with some candidates in order to learn more about their experience living with dementia or as a care partner. Because nominations for the Lived Experience Panel are collected year-round, if the maximum number of nominations are received for the next term, we will notify you via email to discuss other options.

The phone interview will be conducted in the Fall and are intended to be a casual conversation that provides the project leaders the opportunity to learn more about the nominees’ experiences. Nominees may be asked to provide a description of the warning signs, process toward receiving a diagnosis, impact of diagnosis on the individual, support services and gaps in care. Nominees will also be asked to describe their interest in participating in the Lived Experience Panel and his/her thoughts on the value of including the voices of people living with dementia and care partners in dementia research.

Panel Members should be able to participate in conference calls, use email and articulate their thoughts on the topics being discussed. The project leads will manage all meeting logistics so panel members can focus on the work at hand.

Kerry Lanigan, Associate Director of Care and Support with the Alzheimer’s Association.